{
  "abstract": "Background: Returning research results to participants is increasingly recognised as part of participant-centred health research, yet how this is implemented in cohort studies remains largely undescribed. This study provides a descriptive overview of current result return practices across diverse cohort studies in the Netherlands.\n\nMethods: Drawing on the Amsterdam Cohort Hub, an infrastructure of population-based and patient-based cohorts in the Netherlands, representatives of 24 affiliated cohort studies completed a structured questionnaire administered via individual interviews. The questionnaire covered what results are returned, to whom, when, and how. Individual-level and group-level return were distinguished. Cohorts also reported on motivations for returning results and barriers encountered in doing so. Data were summarised descriptively using frequencies.\n\nResults: Individual-level results beyond incidental findings were returned by 14 cohorts (58%), while group-level results were returned by 23 cohorts (96%). Individual-level return primarily involved physical and laboratory measures or was embedded in routine clinical care. Group-level results were mainly shared through newsletters. Limited resources were reported as a barrier by 15 cohorts (65%) and concerns about participant misinterpretation by 14 cohorts (61%).\n\nConclusions: Return of research results is widely practiced across cohort studies but varies considerably in approach, shaped by ethical considerations, practical constraints, and available resources. Individual-level and group-level return follow different logics and require different expertise and infrastructure. Taken together, this overview offers cohorts a practical reference for reflecting on their own result return practices. Our findings highlight a structural gap between growing expectations for participant-centred research and the resources and guidance available to support it in cohort settings.\n\nKey messages: • Return of research results is widely practiced in cohort studies but varies considerably, shaped by cohort type, clinical context, and available resources.\n\n• Limited funding and communication complexity are key barriers, highlighting the need for shared guidance and dedicated support for result return in cohort research.",
  "abstract_shown": true,
  "affiliations": [],
  "article_type": "abstract",
  "arxiv": null,
  "author_total": 3,
  "authors": [
    {
      "name": "Y Qi"
    },
    {
      "name": "ACH Amsterdam Cohort Hub Group"
    },
    {
      "name": "EO Hoogendijk"
    }
  ],
  "bibtex": "https://research.draconitic.com/paper/27esesj5m7nm7.bib",
  "cited_by": 0,
  "doi": "10.1093/eurpub/ckag169.1301",
  "fulltext_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13698277/",
  "id": "27esesj5m7nm7",
  "issns": [
    "1101-1262",
    "1464-360X"
  ],
  "landing_url": "https://doi.org/10.1093/eurpub/ckag169.1301",
  "language": "en",
  "licence": "CC-BY-NC-4.0",
  "licence_label": "CC BY-NC 4.0",
  "licence_source": "article",
  "licence_url": "https://creativecommons.org/licenses/by-nc/4.0/",
  "metadata_licence": null,
  "native_subjects": [
    [
      "heading",
      "6. Poster Displays"
    ],
    [
      "heading",
      "AcademicSubjects/MED00860"
    ],
    [
      "heading",
      "AcademicSubjects/SOC01210"
    ],
    [
      "heading",
      "AcademicSubjects/SOC02610"
    ],
    [
      "heading",
      "DG. Ethics, Rights and Legal action"
    ],
    [
      "openalex",
      "2739|Ethics in Clinical Research"
    ]
  ],
  "openalex": "W7223696406",
  "pdf_url": "https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13698277/pdf/?tool=EBI",
  "pmcid": "PMC13698277",
  "pmid": null,
  "published": "2026-10-01",
  "publisher": "Oxford University Press",
  "ris": "https://research.draconitic.com/paper/27esesj5m7nm7.ris",
  "sources": [
    {
      "first_seen": "2026-10-30T12:19:11Z",
      "native_id": "PMC13698277",
      "source": "pmc",
      "url": "https://doi.org/10.1093/eurpub/ckag169.1301"
    },
    {
      "first_seen": "2026-10-30T12:21:45Z",
      "native_id": "PMC:PMC13698277",
      "source": "europepmc",
      "url": "https://europepmc.org/article/PMC/PMC13698277"
    }
  ],
  "subjects": [
    {
      "field": "medicine",
      "origin": "openalex:2739|Ethics in Clinical Research",
      "subfield": "epidemiology-public-health"
    }
  ],
  "title": "Return of research results to participants in longitudinal cohort studies in health research",
  "title_text": "Return of research results to participants in longitudinal cohort studies in health research",
  "type": "peer-reviewed",
  "updated_at": "2026-10-30T12:35:10Z",
  "url": "https://research.draconitic.com/paper/27esesj5m7nm7",
  "venue": "The European Journal of Public Health",
  "versions": []
}